A Standard Set of Value-Based Patient-Centered Outcomes and Measures of Overall Health in Adults.

BACKGROUND: The definition of population-specific outcomes is an essential precondition for the implementation of value-based health care. We developed a minimum standard outcome set for overall adult health (OAH) to facilitate the implementation of value-based health care in tracking, comparing, and improving overall health care outcomes of adults across multiple conditions, which would be of particular relevance for primary care and public health populations. METHODS: The International Consortium for Health Outcomes Measurement (ICHOM) convened an international panel (patients, clinicians, and topic experts). Following the development of a conceptual framework, a modified Delphi method (supported by public consultations) was implemented to identify, in sequence, the relevant domains, the best instruments for measuring them, the timing of measurement, and the relevant adjustment variables. FINDINGS: Outcomes were identified in relation to overall health status and the domains of physical, mental, and social health. Three instruments covering these domains were identified: PROMIS Scale v1.2-Global Health (10 items), WHO Wellbeing Index (5 items), and the WHO Disability Assessment Schedule 2.0 (12 items). Case-mix variables included a range of sociodemographic and biometric measures. Yearly measurement was proposed for all outcomes and most case-mix variables. INTERPRETATION: The ICHOM OAH Standard Set has been developed through consensus-based methods based on predefined criteria following high standards for the identification and selection of high-quality measures The involvements of a wide range of stakeholders supports the acceptability of the set, which is readily available for use and feasibility testing in clinical settings.

An official American Thoracic Society workshop report: assessment and palliative management of dyspnea crisis.

In 2009, the American Thoracic Society (ATS) funded an assembly project, Palliative Management of Dyspnea Crisis, to focus on identification, management, and optimal resource utilization for effective palliation of acute episodes of dyspnea. We conducted a comprehensive search of the medical literature and evaluated available evidence from systematic evidence-based reviews (SEBRs) using a modified AMSTAR approach and then summarized the palliative management knowledge base for participants to use in discourse at a 2009 ATS workshop. We used an informal consensus process to develop a working definition of this novel entity and established an Ad Hoc Committee on Palliative Management of Dyspnea Crisis to further develop an official ATS document on the topic. The Ad Hoc Committee members defined dyspnea crisis as "sustained and severe resting breathing discomfort that occurs in patients with advanced, often life-limiting illness and overwhelms the patient and caregivers' ability to achieve symptom relief." Dyspnea crisis can occur suddenly and is characteristically without a reversible etiology. The workshop participants focused on dyspnea crisis management for patients in whom the goals of care are focused on palliation and for whom endotracheal intubation and mechanical ventilation are not consistent with articulated preferences. However, approaches to dyspnea crisis may also be appropriate for patients electing life-sustaining treatment. The Ad Hoc Committee developed a Workshop Report concerning assessment of dyspnea crisis; ethical and professional considerations; efficient utilization, communication, and care coordination; clinical management of dyspnea crisis; development of patient education and provider aid products; and enhancing implementation with audit and quality improvement.

Beyond polarization, public preferences suggest policy opportunities to address aging, dying, and family caregiving.

Despite well-documented deficiencies and widespread suffering experienced by millions of elderly or ill Americans and their families, politicians rarely address end-of-life issues. Citizen Forums in New Hampshire surveyed 463 people regarding aging, serious illness, and caregiving. More than 80% indicated it was very or extremely important to have their dignity respected, preferences honored, pain controlled, and to not leave family with debt. Less than half strongly endorsed being kept alive as long as possible, prayed with or for, or having assisted-suicide available. Over 80% strongly endorsed palliative care requirements clinical licensure and reimbursement, expansion of family caregiver leave, respite care, and bereavement support. By avoiding actions which elicit strong divergence of opinion and focusing on actions on which consensus exists, public officials and candidates can respond to problems and improve care and experience for frail elders, dying Americans, and their families.

Peer-professional workgroups in palliative care: a strategy for advancing professional discourse and practice.

BACKGROUND: As part of a comprehensive national effort to improve care at the end of life, the Promoting Excellence in End-of-Life Care program of The Robert Wood Johnson Foundation convened "national peer-professional workgroups" of recognized authorities or leaders to advance palliative aspects of practice in their respective specialties or fields. OBJECTIVE: The conveners' goals were to establish research and practice agendas to integrate palliative care within selected fields and health care settings, and to expand delivery of palliative care to special patient populations that have been underserved by palliative care. We hypothesized that leading professionals within specific fields, chartered to achieve clear goals, and then provided with sufficient administrative and logistical support, could develop recommendations for expanding access to, quality of and financing for palliative care within their disciplines. DESIGN: Staff at the national program office of Promoting Excellence in End-of-Life Care convened eight disease-based, specialty-based or issue-based workgroups (the selected workgroup topics were amyotrophic lateral sclerosis, cost accounting, critical care, end-stage renal disease, human immunodeficiency virus/acquired immune deficiency syndrome [HIV/AIDS] disease, Huntington's disease, pediatric care, and surgical palliative care). The national program office implemented a small group process design in convening the groups, and provided coordination, oversight and administrative support, along with funds to support meetings (telephone and in-person). A workgroup "charter" guided groups in determining the scope of efforts and set specific, time-limited goals. From the outset, the workgroups developed plans for dissemination of workgroup recommendations to defined stakeholder audiences, including health care providers, policy-makers, payers, researchers, funders, educators, professional organizations and patient advocacy groups. SETTING AND SUBJECTS: Groups averaged 25 members and met for an average of 24 months. Promoting Excellence leadership chose workgroup topic areas that addressed patient populations underserved for palliative care, and corresponding professional specialties with demonstrated interest and readiness to improve education, evidence base, and professional expertise in palliative aspects of care. RESULTS: Each workgroup was highly productive and advanced changes in respective fields through developing and disseminating recommendations to their respective fields regarding practice, education, clinical and health service research and policy. Beyond their chartered responsibilities, workgroups also developed educational programs and curricula and a wide array of resources. The workgroups also authored articles for publication, intended to stimulate professional discourse and influence clinical norms and culture. CONCLUSIONS: The national peer-professional workgroup model exceeded original expectations and produced well-considered Recommendations to the Field as well as a body of resources for professionals in expanding access to and quality of palliative care. Results of this experimental venture in professional change suggest that the workgroup model may be a useful, cost-effective, rapid-change strategy for quality improvement in other areas of professional practice and service delivery.

Promoting excellence in end-of-life care: a report on innovative models of palliative care.

BACKGROUND: Promoting Excellence in End-of Life Care, a national program of The Robert Wood Johnson Foundation, funded 22 demonstration projects representing a wide range of health care settings and patient populations to develop innovative models for delivering palliative care that addressed documented deficiencies in the care of patients and families facing the final stage of life. OBJECTIVE: To determine the practicality (feasibility of development and operation as well as acceptance by stakeholders) of new models of care and to determine the impact of the models on access to, quality of and financing for palliative care. DESIGN: The program cannot report scientifically rigorous outcomes, but the grant-funded projects used a variety of methods and measures to assess acceptance of new models and their impact from the perspectives of various stakeholders, including patients and their families, clinicians, administrators and payers. While it is not possible to aggregate data across projects, the data reported to the Promoting Excellence national program office were used to describe program impact with respect to the practicality of palliative care service integration into existing clinical care settings (feasibility and acceptance by stakeholders), the availability and use of palliative care services (access), quality of care (conformance to patient expectations and accepted clinical standards) and costs of care. SETTINGS AND SUBJECTS: The 22 projects provided services in urban as well as rural settings, in integrated health systems, hospitals, outpatient clinics, cancer centers, nursing homes, renal dialysis clinics, inner city public health and safety net systems and prisons. Populations served included prison inmates, military veterans, renal dialysis patients, Native Americans, Native Alaskans, and African American patients, inner-city medically underserved patients, pediatric patients, and persons with serious mental illness patients. RESULTS: Hosting or adopting institutions sustained or expanded twenty of the 22 models, and feedback from all stakeholders was positive. Project sites developed and utilized new palliative care services and addressed quality through implementation of new standards and clinical protocols. Costs of care, where they could be assessed, were unaffected or decreased for project patients versus historical or concurrent controls. CONCLUSIONS: The 22 Promoting Excellence in End-of Life Care projects demonstrated that by individualizing patient and family assessment, effectively employing existing resources and aligning services with specific patient and family needs, it is possible to expand access to palliative services and improve quality of care in ways that are financially feasible and acceptable to patients, families, clinicians, administrators, and payers.

Hospice benefits and phase I cancer trials.

Medicare denies hospice coverage to patients with terminal illnesses who enroll as participants in phase I studies, which assess the toxicity and dosing of potential treatments for incurable diseases. Federal regulations require patients to forgo curative therapies, and they interpret phase I agents as treatment for the terminal condition for which hospice care was elected. Thus, by enrolling as a participant in a phase I trial, a patient otherwise eligible for hospice is rendered ineligible. Private insurers have similar provisions for children and adults younger than 65 years of age. Such exclusions are not defensible on ethical or clinical grounds. Policymakers, insurers, and institutional review boards all have a role in resolving this problem.